Reducing to allow Specialist to investigate

[Mamamia21]

I have been on this journey since 2016 when I was diagnosed by the dr that I had PMR and put on steroids and became pain-free, I am now 54. Long story short the specialist (now 3 of them) still don't think it is PMR but can't give me an answer to what it is. Axial spondyloarthritis is the best guess. I am currently on a slow reduction to try and get to 5mg in order for them to do more tests (apparently no tests can be done until then as the steroids are masking any issues) I am waiting for an MRI on my neck which has now been painful for nearly a year.

I am currently reducing to 6.5mg, I also have shoulder pain (although I do have movement in my shoulders) and now have pain in my hands which makes picking things up painful. It is mainly in my thumb and first finger joints.

It is the hands that are really concerning me as I have not experienced this before. Is this usual?

And it is true that I can't have any tests until I am down to 5mg? It seems strange to me that others are getting diagnosed with other conditions and are on higher steroids than me...

[PMRpro Ambassador]

It does depend what tests they want to do - and the department, since some seem to think a PET-CT done at 7mg is valid but mine didn't show anything. Does that just mean I don't have what we were looking for? I have to say - I don't understand though, are they saying that all tests will be masked by pred? I can't see how an MRI would be affected, surely long term damage would still be obvious.

I get hand pain as I reduce my dose at any level but hand pain was always part of my PMR. I also have to say that if they are forcing you to a low dose to do tests, I can't see the point of it being slow. Once you get below the lowest effective dose for you, going faster means that you will have a shorter period of pain and discomfort. The slowness is to make life more comfortable in the long term

[Mamamia21 in reply to PMRpro]

Thanks, PMRpro, that is what I have been thinking. I will make another appointment to see the doctor to discuss this... If I know when my tests are I can work towards reducing quicker...

[DorsetLady PMRGCAuk volunteer]

As PMRpro says, hands/fingers could be PMR, but may also be osteoarthritis as could the shoulder.. it’s very often difficult to tell.

Perhaps you could try painkillers or ibruprofen gel and see if they help…if they do it may be OA, if not, then most likely PMR.

Hopefully you will get some definitive answers soon.

[piglette]

The fact you became pain free after starting the steroids does seem to point to PMR, but it may be something else.